We are delighted to introduce Matt and Jodi Parry to tell us about their charity, Twincess.
“Twincess is a charitable trust that was set up by us – Matt and Jodi Parry – after our twin daughters Abigail and Isobel were born with Down’s Syndrome on June 29, 2011.
It’s estimated that the odds of having identical twins with Down’s Syndrome is around 2,000,000 to 1 and it can feel very lonely to be the parents of children with the condition. Although we received a lot of well-meaning advice about Down’s Syndrome from health professionals when our girls were born, what we wanted more than anything was to contact somebody who’d been on the same journey as we were about to embark on. This is why we set up Twincess.
Twincess is place where families of those with Down’s Syndrome can connect, share, support and celebrate! It is about providing frank and honest advice based on real, personal experience. There’s a lot of negativity around the condition with the focus often being around what children with Down’s Syndrome can’t do. Twincess is about highlighting what they can do.
Twincess is not judgemental. We’re there for you if you’re expecting, or have a child with Down’s Syndrome and want to hear a parent’s perspective. As well as creating this website and informative leaflets, our campaign – which is backed by a network of trustees and supporters – holds frequent events to network and to celebrate the positives of Down’s Syndrome.
Down’s Syndrome is not an illness. It is nothing to be ashamed of, pitied or looked down upon – despite an extra chromosome, people with Down’s Syndrome are no different to anyone else. People with the condition, and those around them, are very proud of who they are.
Our long-term goal is to change society’s misconceptions and help people see the Ups and not the ‘Down’s’ of the condition.”
Around one in every 1,000 babies born in the UK will have Down’s Syndrome. It is caused by the presence of an extra chromosome in a baby’s cells, this occurs by chance at conception. Although people with the syndrome will have a degree of learning difficulty, most will walk and talk and many will read and write, go to ordinary schools and lead fulfilling, semi-independent lives.